Hello! And welcome to the second part of my story. If you are wondering where things started, please check out Part 1 that details my struggle with health challenges as a child. Otherwise, let’s continue reading about my own personal journey with autoimmune disease.
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On to the College Years!
By the time I reached college, I had acquired many unexplainable and uncomfortable symptoms with no diagnosable cause. I still had nausea, gastrointestinal pain, and regularity problems on a daily basis and started suffering from constant fatigue and pain as well. Regardless of what doctor or specialist I saw, no one could give me the answers I was looking for or recommendations on how to improve my symptoms long-term. Over time, my doctors merely tried treating my symptoms as they occurred with prescribed medications instead of trying to find any specific cause or diagnosis.
During my junior year of college, I had what I know now as a severe ‘flare-up’ of symptoms. I suffered a lot of pain on my right side, couldn’t keep much of what I was eating down, and was constantly tired. Eventually, I obtained a ‘second opinion’ from another gastroenterologist than I was currently seeing and upon review of my medical records, was informed that my body could not process dairy. Now, this wasn’t just any normal dairy or lactose allergy. This also included an allergy to whey protein so I could forget about taking those tiny enzyme pills, still eating dairy, and going about my day. This was a stop-eating-any-kind-of-dairy-immediately type of situation.
Considering I lived off of cheese, ranch dressing, and butter at the time, this was a very difficult transition for me. I had to cut out any and all dairy products immediately and found myself constantly wondering what in the world I could eat. It has now been 8 years since I had to implement a dairy-free lifestyle and I now have a pretty good handle on dairy-free substitutions, recipes, and products that do not flare my symptoms. In future posts, I plan to share more of this dairy-free knowledge and information with you just in case you or someone you know may also benefit from it.
My First Autoimmune-Related Surgery
As time moved on, I had learned how to change my diet and avoid any and all dairy products altogether; however, I was still experiencing symptoms. Eventually, my doctor took a look at my gallbladder and realized that it was only functioning at a whopping 30%. He recommended arthroscopic surgery right away and by the time they actually removed my gallbladder, it had actually ceased functioning at all. My gallbladder was white and fell apart when it was removed. To be safe, my doctor then scraped the lining around where my gallbladder had once been to make sure no random pieces of it were left behind. This caused added pain and more time in recovery; however, it was better than the alternative of a possible infection if something had been missed.
After my gallbladder was removed, I figured that must have been the cause of my symptoms and at the time, didn’t really look much further. I continued watching my diet but would ‘cheat’ every so often with dairy. The symptoms I had before would come rushing back with a vengeance and I would find myself lecturing myself on my own need for self-control. During this entire time, I was also taking classes at a local university in education with an original plan of completing both required coursework and a student teaching internship to become a certified high school English Language Arts teacher. I was going into my 3rd year and even though food still did not always agree with me, I just keep pushing forward and adding more and more responsibilities to my plate.
My First Autoimmune Diagnosis: Hello, Crohn’s Disease (We Think)!
In the Fall of 2007, I started attending classes on campus the same as I had the three years before; however, my symptoms really started to flare and I noticed that it had started to become more and more difficult for me to actually attend class on campus. Whether I was worried about an assignment, quiz, or test or was just stressed over life, I always seemed to find myself stuck in the bathroom right when it was time for me leave. For a while, I thought this could be a crazy side effect of some weird form of anxiety but then as my symptoms continued and gradually became more and more frequent, I realized there may be something else going on.
During this time, I returned to my gastroenterologist with a healthy list of both new and old symptoms, a food journal I was still keeping, and a list of things I had personally tried but didn’t work. My gastroenterologist agreed that it appeared that something else was going on and decided to focus on scheduling a colonoscopy to show us what might be happening. During my colonoscopy, pockets of inflammation were recorded and biopsied and I was diagnosed with ileitis and “probable” Crohn’s Disease. My gastroenterologist immediately placed me on steroid medications for Crohn’s and followed up with me once the biopsies he collected were returned.
Here is where it gets a little weird. Even though I showed obvious signs of intestinal inflammation in areas that are known to be problems for Crohn’s Disease patients and my biopsy results resulted in a definitive Crohn’s Disease diagnosis, my gastroenterologist did not necessarily agree with his own findings. You see, for years, my symptoms would fluctuate between severe constipation and excessive diarrhea. It was either one extreme or the other and each symptom usually occurred for days at a time. Since ‘normal’ symptoms of most Crohn’s Disease patients included excessive diarrhea all the time, my doctor was left questioning his own diagnosis. Just as quickly as the lab and office told me I did, in fact, have Crohn’s Disease, my gastroenterologist took that diagnosis away and stated he felt our findings were inconclusive. He did not feel comfortable adding an official Crohn’s Disease diagnosis to my plate if he did not 100% agree with it. So, even though I was still being treated for Crohn’s, I could not officially add this title to my medical records. This was definitely a very confusing time in my life where every doctor I saw only confused me even more.
My Journey At Home
Due to side effects from the steroid medications I was on and the symptoms I was still experiencing, I really struggled to make it to class. Worried that my absence would affect my course grades, I finally worked with my college professors to finish what coursework I could from home. I slipped into depression, consumed by my symptoms on a daily basis and was worried that I may not get the chance to complete my internship (student teaching – which is a requirement to finish most teaching programs). I couldn’t even make it to class a few days per week; how in the world was I going to student teach on a normal school schedule for 3 full months? Better yet, how was I going to graduate from a teaching program if I could not complete this non-negotiable requirement of student teaching?
Because of this worry and all the anxiety and stress my physical symptoms were causing, I decided to transfer my classes and credits to a fully online program. At the rate things were going, I knew I wasn’t going to be able to complete the requirements for the education degree I wanted so I basically plopped my transferred credits into the most open-ended degree I could find. I figured that at least I could finish with something, work for a while, get my health figured out, and then I could always return to finish the education side of my degree once my health had improved.
During this time, my health was really taking a toll on my life. I couldn’t work, couldn’t hang out with my friends, and couldn’t attend on-campus classes. Most of the time, I felt like I couldn’t eat without getting sick and I hated the sight of food most days. I slept a lot, watched a lot of CSI, and tried to acquire some hobbies (like reading and photography) that I could do from home. Many of my professors recommended that I take some time off to allow my health to improve before I pursued senior-level courses and my state’s official teaching certification but I just couldn’t bring myself to do it.
One of my biggest worries was that if I took some time off from my coursework to rest and recover, that I would never actually return to school and finish the degree I had started 3 years before. To my benefit, I was able to transfer all of my classes and credits into an online Bachelor of Science in Business Administration degree and finish my degree when I normally would have with my campus-based program. I mean, it wasn’t a teaching degree but at least I could say I had finished! And I constantly kept telling myself that I could always go back to school and finish what I had started in education if my health improved and I didn’t enjoy a career in business. I learned later on how much easier said than done that really was haha!
Even though I had finished a degree program 4 years after I had started just like I wanted, my degree was in something totally unrelated to what I actually wanted to do with my adult career. However, after months of taking steroids and feeling like a prisoner of my symptoms while I continued living at home, my symptoms finally started to subside. I remember asking myself, “what in the world just happened?” I had battled what felt like a raging war inside my own body and had completed a college degree program somehow all within what felt like one of the craziest years I had ever experienced.
It was at this point that I started a lifelong journey with managing symptoms, balancing health-related appointments and treatments, and researching as much as I could about gut health, nutrition, and chronic illness. I was never one to let anything hold me back for very long and I took this as a learning experience, got back to work, and ran with it. However, I never really changed my diet or my habits for long and just kept “pushing through” life as I always had been. Little did I know that remission is short-lived and that I would return to this exact health-related crisis just 6 years later.
As you are reading, please do remember that I am not a medical professional, nurse, health coach, or any other health professional of any kind. I am a patient with years of experience with autoimmune disease and will be sharing information and resources from a patient’s perspective; however, please do keep in mind that anything that I share here should not replace any medical advice you should receive from a doctor or other medical professional. Please consult with your doctor before changing anything in your routine or care. You can read more about this here.